MAY IS LUPUS AWARENESS MONTH

Greetings Family!

puffy face from all the medication

during my last visit in Jan.

Many of you who follow me/my blog know that I have been surviving and living in spite of lupus, among a few other things that may actually seem much more serious. But, had it not been for lupus, I wouldn't have all the other diseases and issues.

lupus is a bitch. Truly.
(yes lowercase, this bitch doesn’t deserve proper noun status) 

I’ve had a few good years with only a few minor hiccups, and absolutely no chemo – actually, November 2015 would have been 3 whole years!! But you can always count on that bitch to act up at the most inopportune times. And she did. Just as I was ready to celebrate 3 years chemo free and claim the oh so coveted tittle ‘REMISSION’. But nope. Not only did that bitch show up, but she decided, as usual, to put her own twist on things.

The new hiccup - my blood ‘disorder’ is now a full blown disease of its own where I bounce back and forth between not making enough platelets (meaning if I fall or get cut, I won’t stop bleeding because my blood can’t clot), and creating too many platelets which means my blood clots too much (and in all the wrong places, which can kill me). This has happened before with my lungs. My heart. My brain and central nervous system. My connective tissue (muscles). My bones… sigh.

Unfortunately this is an all too well of a traveled road for me. And dear Juan. And dear Ladybug.  

this is how much they're SUPPOSE to take every 2 weeks

You see, lupus is a disease where your body’s own defense mechanisms, the very things that exist to protect you, turn on you, and see you as the enemy. Well at least your major organs and systems that are usually essential to actually living. Breathing. Moving. Living. I’ve had a catheter port in my chest for years, and it has finally stopped working, thanks to that bitch lupus. Through both my blood disease and vascular disease (my veins, arteries, vessels, and capillaries), it attacked my beloved port and I now no longer have what’s called ‘central access’, which for me is a critical situation. Why? It’s the only means of access, meaning it’s how all lab work is drawn, how I received fluids and medications, including chemo (which I was supposed to have started back in November – yeah, my docs are quite anxious, and this time it’s not my fault.. at least directly). Without going into too much detail at this moment, let’s just say it’s a damned if I do/damned if I don’t scenario. 

So now it’s time, once again, to suit up, pray hard, and head back in to battle. Man. I’m outta practice actually. I’ve been livin’ large these last few years. I think I’ve turned into a bit of a punk. But, like me, there are so many out there living with lupus. And doing it WAY better than I am. So who am I to whine and complain? Right?  

For more information about this bitch, please go to the
Lupus Foundation of America.

May is lupus Awareness Month. Trust and believe that someone you know has lupus. 

I have lupus.

More Reality

Hey Y’all. 

I’m realizing that I haven’t spoken to my mom since New Year’s Day and I’m starting to feel some kind of way about it. I’ve mentioned very little in the past about my family, Mommy Dearest issues particularly, fearing her wrath and mental manipulation if she somehow found out about me talking about her in such a public way, and if I talked about her too much in a not so flattering way, or not enough in a flattering way (she’s a “damned if you do, damned if you don’t” kind of person). But as part of my preparation for 2014, I did a mental and emotional vomit here on my blog, where I shared just some of the emotional and psychological pain of my past, because I refused to bring all the crap that I’ve either not wanted to deal with, or was hiding from into the new year and on, going forward. The relationship I have with her, and my father to an extent, is the only area of my life that isn’t ‘together’, and I feel like a hypocrite most days. Honestly, it has kept me from blogging as much as I’d like, and some days from blogging all together.

With that said, Mommy Dearest had created an untenable situation for me and I continue to struggle with what do and how to handle it. How can I be candid about my own feelings and internal struggles and conflict here without going into detail? Without making her seem like a monster? Well, yes, she can be. Some would say she is. Monster or not, I struggle so with how to handle her. Some say I just need to cut her off completely. Some say I need to face her, tell her on no uncertain terms, just what she’s put me through, that she’s full of shit, and issue an ultimatum that she either get it together or I won’t be in her life. Well, what I have done is to either just deal with her or just avoid her, which is really what I’ve done most of the time. Other times I wouldn’t say a word when she’d begin her manipulations or victim playing. I’d just smile, be polite, and keep my mouth shut – like I was trained. Now there have been times, especially since I’ve been sick, when I would put the brakes on the madness, and it often got funky. But again, she’s a masterful manipulator and I am no match. So the fact that I haven’t spoken to my mother in just over a month now may very well be one of her little tests of love and adoration or just be her uniquely twisted form of petulance. 

Either way, I’m not dealing with it anymore. I’m no longer going to willingly compromise my own truth and personal integrity, silence my voice and jeopardize my health for the sake of continuing to have a twisted relationship with my mother.

At the beginning of the year I told myself that I wouldn’t be around her unless I could speak my truth, or hell, just tell the truth. But then I realized that if the truth didn’t match up to her reality at that moment, then she’d have a problem, no matter what, and back to the damned if you do (you know the rest). So here I am, feeling stuck around this situation, again. How do I end this? 

Sigh…

Be well ♥

Freakish Weather!

both new and old bay bridges heading west into san francisco

Here January is and it’s practically 80 degrees today here in the SF Bay Area. It’s supposed to be cold and rainy, some of my favorite weather, but instead it’s like late spring. And I’m not happy I tell you. 

Winter/Fall is probably my favorite time of year. I love the cool crispness, how the rain cleanses everything, the snow, my winter veggie garden. I love winter fashion too - the sweaters, scarves, hats, boots, big heavy coats, and leather. But more importantly, it’s time for soups, stews, and hearty slow cooked food!! And you all know how I love my food! But making a big pot of cannellini bean soup with chunks of ham, carrots and swiss chard poured over rice with Juan’s fabulous cast iron skillet cornbread just doesn’t feel right. My brain, my wardrobe, and my taste buds are in a state of flux! 

 

blessed.

It was such a pretty day last week, that ladybug and I goofed around a bit before heading to tennis practice. We're truly blessed to live in such an amazingly beautiful place, no matter how wacky the weather can be! We get to see these views almost every day. 

Be well

we get to see this practically every day!

isn't she beautiful?

decisions, decisions...

I’ve been struggling with my hair for a while now, since December really – my last round of chemo. I guess it’s finally caved to all the chemo and medications. I don’t blame it really, it’s put up a great fight over these many years that I’ve been dealing with one health crisis after another, on top of the chemical texturizer every 3-4 months. Hurray hair, what a trooper!!

Yes, I’ve been spoiled by having great hair for decades. It’s always behaved, I’ve never had to wrap it or ‘train’ it, and it always managed to look like I’ve just stepped out of a salon, most of the time. Even during my darkest chemo days. Most people couldn’t even tell how much had actually come out or just how it has thinned. But now it doesn’t know what it wants to do and I don’t know what to do with it and I’m frustrated. So I’m at a point where I just want to chop it all off. For my hairs sake, but also because I am in a place right now where I am in need of change. Desperate for change. So, no, it’s not just about my hair. 

I’ve been seriously considering going ‘natural’. No, I don’t have a relaxer, what has now come to be called creamy crack, but I do have a texturizer and have had one for many, many years now – even through chemo. It has allowed me to be semi-natural - not that that was my intent, but because I didn’t have to see the inside of a salon for at least 3-4 months at a time. This kept me from being slave to the salon – something I absolutely abhor for my own personal reasons (like being there ALL day, then half the time having to go home to ‘fix’ the expensive style). But I’m thinking, with all the chemicals I’ve been dealing with, have to deal with because of my health, that I really should consider giving my hair a true break.

In my research and exploration about natural hair, it’s care, and the whole process of going natural, and was surprised to see that this issue is pretty political and contentious – which I don’t understand. It’s a very personal choice, so with that said, that’s all I’ll say. 

I’ve always wanted to be a girly girl – into make-up, clothes, fashion, and hair – and I’m beginning to bloom into that chick in so many ways. But I’m realizing that when it comes to hair, I’m just not that kind of chick. Since getting my hair cut for the second time (almost 6 inches total cut off since May!) a few weeks ago, I’ve been playing around with my hair, trying to get a feel for what it can do, what my abilities and inclinations are. And I see that I am not the one. It’s just more work than I want to do. PERIOD. I could blame my health – thanks to some of my diseases I have muscle deterioration and blood clotting issues, so always having my arms above my head is just not something I can do. But really, I just don’t want to spend SO MUCH TIME dealing with my hair, only for it to come out in a way that requires even more time fixing. Remember, I HATE the salon, but at least someone else is doing my hair! 

So I’m in this weird place of trying to ride out the whole ‘growing out my texturizer so I can actually be natural’ process and finding a few hair styles that will get me there, or chop it all the hell off and be done, or keep the occasional texturizer but still chop it the hell off (in a little pixie style maybe??). 

I really don’t know what to do.  Help.